Next!!

My oncologist in Norfolk is part of a large practice called Virginia Oncology.  I’m not sure, but I think they are part of a national chain of oncology practices.  I don’t think there is anything worse on your nerves than going to an oncology office, especially for the first time.  The fear of the unknown combined with the feeling like the waiting room is a crowded bus terminal can be pretty overwhelming.

All of that being said, I am extremely happy with my oncologist and his level of expertise in the field.  Even though he really knows his stuff and stays current with all of the advancements in my types of cancer, he has never hesitated to suggest I get second opinions or even have complicated procedures performed at the Duke Cancer Center, which is only a three hour drive away.  I realize how lucky I am to have such a great doctor and I know that not everyone in my circumstance can say the same thing.

If you are going through cancer treatments, DO NOT settle for care that you don’t feel good about.  Just because they are the ones wearing the white coats doesn’t mean you don’t have the right to the care and treatment that you deserve.  This includes talking with you in language you can understand and spending time with you until you fully understand what is going on.

If you need to find a doctor near you who specializes in Multiple Myeloma or Leukemia, these websites can be a great help:

The International Myeloma Foundation:  https://www.myeloma.org/are-you-newly-diagnosed

The Multiple Myeloma Research Foundation:  https://themmrf.org/multiple-myeloma/resources/

The Leukemia and Lymphoma Society:  http://www.lls.org/

I cannot stress it enough, DO NOT settle for insufficient care.  We really don’t get second chances with our situations, so you have to be your own best advocate!

I’ve Got That Funny Feeling

Sixteen years ago when I was diagnosed with Multiple Myeloma, my initial treatments included massive doses of Thalomid (Celgene’s version of the old banned drug Thalidomide).  That’s the way it was done back then.  Over the next few years they gradually reduced my doses and eventually replaced the drug with the next generation drug, Revlimid. 

In addition to the terrible side effect of potential fetal deformities, another side effect (of many) for Thalomid was peripheral neuropathy.  That is, the killing off of the nerves in your extremities like your hands and feet.  Revlimid was engineered to have less of this side effect, but it is still there to a smaller degree.  I did develop a deadening of the nerves in my toes and finger tips and along the outside of my little fingers.  I even lost the nerves and sense of taste on the tip of my tongue.

I was always told that once you get peripheral neuropathy that was it.  There was no getting rid of it or restoring the feelings in the affected areas.  I guess I was lucky because over the course of a several years I regained the feeling in the affected areas, including my tongue.  Weird!

However, I think it was not a case of the nerves healing, but rather the other nerves around the damaged areas making up for the lost sensations.  I say this because last winter when I was out in the cold for a long period of time shoveling snow from our driveway, the extreme tingling came back in my hands and fingers.  The good news was that after a couple of months it went away again.

It was good that my doctor and I caught the peripheral neuropathy early enough and were able to mitigate its negative affects by reducing the doses of my drugs.  Lesson learned – don’t be afraid to speak up about personal issues with your doctor!

The New Normal

So you have made it through a stem cell transplant and are now mostly recovered.  Awesome, congratulations!  But be sure to adjust your expectations that you will quickly return to your baseline physical and mental condition from before your diagnosis.  While you will feel pretty good, know that it takes a long time to fully get back to what you were.  And some people never get back to 100%.

It really becomes a matter of managing your expectations and gradually working on your physical and mental recovery.  Just like the way you worked through your treatment regimen – patience and one day at a time – is the same thing you need to do with your long term recovery.  Stay with your daily workout routine, which should include walking, and try to gradually increase the level of workout and distance covered.  “Gradually” being the operative word here.  Don’t push yourself too hard or too fast, or you will find yourself being set back.  Just resolve yourself to the reality that you can’t rush things, no matter how badly you want to speed up your recovery time.  And you should also find something to challenge yourself mentally to give your brain a workout.  I found playing Scrabble worked well for me.

You will eventually get to a good physical and mental condition.  It might not be fully what you were before, but it is certainly better than the alternative!  While your physical recovery will be fairly easy to measure, your mental recovery is a trickier thing to quantify.  Depending on the level and intensity of your treatments, “chemo brain” can be a very real and annoying condition.

Don’t let yourself get too frustrated when you find you can’t remember things that you know you knew before your treatments.  You have to cut yourself some slack and admit this is what happens to a person after they go through the tough treatments you did.  At the risk of being the bearer of bad news, I don’t know if it ever comes back 100%.  I am now sixteen years post auto stem cell transplant and I still experience chemo brain moments.  And this was before my Leukemia treatments started a year and a half ago!  Maybe it is a bit of senior-ites, but I don’t think so.  Nancy is close to my age and she doesn’t seem to have these issues.

I think the best answer is to keep at it and to admit to yourself that it is okay when you hit a wall of physical endurance or mental clarity.  After all that we have been through, we deserve to be given a break once in a while.

The Doctor Is In

The majority of people diagnosed with Multiple Myeloma (bone marrow cancer) or Acute Myeloid Leukemia are fifty-five years old or older, as am I.  As a result, we are from a generation who generally hold the people in white coats and are called doctors in very high regard.  I mean, if they are a doctor they must know what they are talking about, right?  And they know everything, don’t they?

Unfortunately this is not always the case.  It isn’t necessarily that your oncologist is a bad doctor, but the new treatments for these cancers are advancing so rapidly that most general oncologists cannot keep up.  They only have so much time in a day between seeing patients and doing paperwork that they can hardly stay up-to-the-minute with all the new info coming out on these cancers.

Unless you are sure that your oncologist is staying current with all the new diagnostic and treatment options, you need to find a doctor that specializes in your type of cancer.  It really is your responsibility to look out for yourself.

A GREAT source of information on everything about Multiple Myeloma is the International Myeloma Foundation (www.myeloma.org).  They have a huge number of support groups across the country.  They also have a hotline where you can get a reference for the specialist nearest to you.

If you are fighting Leukemia, the best organization to find help is the Leukemia and Lymphoma Society (www.lls.org).

I cannot stress this enough – make sure you have the best doctor possible working with you.  You have to be assertive about this or you might very well pay the price with your life.  I know that sounds melodramatic, but it is true.  You only get one shot, and you don’t want to waste it with someone who is not well versed in your specific cancer and all the new and ever-changing treatment options.

Whew!

So I had a follow-up appointment at the Duke Cancer Institute a few days ago.  It has been a year and four months since my stem cell transplant (using my brother’s cells) to knock out my Leukemia.  I wasn’t expecting any major news and indeed, the doctor was very pleased with my progress.

They did however spring a bone marrow biopsy on me.  Surprise!  That is where they drill into your back hip bone and pull out some marrow for evaluation.  It is the most accurate way they have to test what is actually going on in your bone marrow.  As you can imagine, the procedure is not a lot of fun but I have been through enough of them that it is now somewhat tolerable.  In fact, I joke that I have had enough of those biopsies that they ought to make everyone’s life easier and just install a beer tap back there.

While I haven’t been up nights worrying about a recurrence of my Leukemia, it is always in the back of your mind playing the “what if” game.  Like a Whack-a-Mole game it pops up when you are thinking of other things, usually late at night, and then you can’t ignore the train of thought.  Then you have to work very hard to not let it take off and snowball into a mountain of worry.

So when the nurse from Duke called me yesterday to give me the preliminary results from my biopsy, I fought off a minor anxiety attack and took the call.  Needless to say, I was very happy to hear there is currently no sign of Leukemia or Multiple Myeloma in my bone marrow.  Whew! I knew that was what they were going to say.  Yeah, right!

You know what it feels like to have a really big weight taken off your shoulders?  It is amazing to me how a mental game like this can so greatly affect the way you look at everything.  It is all part of the emotional yo-yo ride you live on when you have cancer.  I think the best answer is to enjoy what we have and make the most out of each day.  I know that sounds corny and over-simplistic, but to me it really is the truth.

Heeelllllp – Again!!!!!

I posted this a while ago, but I think it is important enough that it should be repeated for those who haven’t read all of my past posts.

So you have been diagnosed with Multiple Myeloma (bone marrow cancer) or Leukemia.  It is time for a crash course in cancer education.  Also, if you have lost your job due to your treatments, what the hell are you going to do to make ends meet in the bills department?

For information about Multiple Myeloma, you can’t beat:

International Myeloma Foundation: https://www.myeloma.org/ for information and emotional support, including area support groups.

Multiple Myeloma Research Foundation: https://themmrf.org/ for information including new drugs that are “in the pipeline”

For information about Leukemia and Lymphoma, the best is:

The Leukemia and Lymphoma Society: http://www.lls.org/ for information and support.  They also have some financial assistance programs, which will be addressed below.

Of course, there is also The American Cancer Society: https://www.cancer.org/ for information and support.

For financial support, you should Google: cancer financial support.  Be prepared, you will get a ton of different listings.  Unfortunately, you will need to slog through each of them to determine if they can apply to you.  Some are cancer type specific and some are geographic area specific, and most require proof of financial need.  You should also ask your oncologist if their office has a person on staff to help you find local sources for financial assistance.  All of this is really a difficult burden on top of dealing with your cancer treatments, but unless you are financially sound, we really don’t have much choice in the matter.  Just keep at it and chase them all down.

Here are some of the organizations that I found who can help with grants and financial support.  Most of them are only able to offer support when they have funds “on hand” which is not always year-round.

The Leukemia and Lymphoma Society: http://www.lls.org/  They have a $500 travel assistance program.  They also have a separate support fund specifically for people with Multiple Myeloma.

Patient Advocate Foundation: https://www.copays.org/  They have a program that will help pay for your co-payment on your medicines.  Be prepared, they ask for a ton of paperwork.

Daniel’s Grace Foundation: http://danielsgrace.org/  They are a great, all-volunteer organization that serves the Hampton Roads, VA area.  Their mission is “to ease the financial burden of cancer.”  They also have a scholarship program to help student whose lives have been affected by cancer.

Mercy Medical Angels:  http://mercymedical.org/  Their mission is “to ensure that no one in need is denied medical care because of a lack of transportation.”  In my case, they provided a round trip airfare for my stem cell donor. 

Angel Wheels: http://angelwheels.org/  They are “dedicated to providing non-emergency, long-distance ground transportation to financially disadvantaged, ambulatory patients who are traveling for treatment. “  A typical trip supported by Angel Wheels does not exceed 300 miles (one-way), and they do not normally handle trips within a local area or community. Exceptions are made on a case-by-case basis, routinely for cancer patients traveling daily for treatment.  Angel Wheels to Healing utilizes the following resources for assisting patients: Gas cards (provided to help off-set fuel cost for patients), Bus Tickets (Greyhound, Trailways, etc.) and Train Tickets (Amtrak).

Family Reach: https://familyreach.org/  They are a national nonprofit dedicated to alleviating the financial burden of cancer.

The Bone Marrow Foundation: http://bonemarrow.org/   They provide financial assistance and resources for patients, caregivers and survivors.

Lee’s Friends: http://leesfriends.org/  They are a Hampton Roads, VA based organization whose primary mission is “To offer person to person help and needed emotional and practical support to cancer patients and their families who are facing the crisis of diagnosis and treatment of cancer.”

Good Days: https://mygooddays.org/  For support and financial assistance.

The Actors Fund: https://actorsfund.org/  They can provide some short term support “for everyone in entertainment. “

Also, most pharmaceutical companies have financial assistance programs to help if you cannot afford their drugs.

Patient Resource: https://www.patientresource.com/Financial_Resources.aspx  This is a lengthy, but VERY comprehensive list of organizations that provide support.

Don’t despair.  You can do it and find help!  GOOD LUCK!!

CAR T-Cell Therapy

Over the past several years, immunotherapy — therapies that enlist and strengthen the power of a patient’s immune system to attack tumors — has emerged as what many in the cancer community now call the “fifth pillar” of cancer treatment.  A rapidly emerging immunotherapy approach is called adoptive cell transfer (ACT): collecting and using patients’ own immune cells to treat their cancer. There are several types of ACT but, thus far, the one that has advanced the furthest in clinical development is called CAR T-cell therapy.

See: https://www.cancer.gov/about-cancer/treatment/research/car-t-cells

And: https://labiotech.eu/car-t-therapy-cancer-review/

If you are an adult fighting a Lymphoma or have a child fighting ALL (Leukemia) and your doctor has not yet talked with you about CAR T-Cell therapy, you need to find a doctor who knows about it and can work with you on the potential application of this new treatment option. 

But be careful as you are doing your online research.  While this new therapy is showing great promise, it has also shown some severe side effects, even death, in some of the early trials.  There are several drug companies now pedaling their recently FDA-approved drugs that fall into this category of treatments.  Of course they are competing for your business and at $373,000 to $475,000 (currently) per treatment, there is a high incentive for them to get you to buy their treatments. 

I guess this is why it feels a bit like the online Wild-Wild West when I start googling about CAR T-cell therapy.  You will find a ton of links, but you have to work very hard to separate online ads and info posted by pharmaceutical companies from info posted by legitimate medical sources.  And as the potential for these new therapies to be used as treatments for Leukemia and Multiple Myeloma are developed, it will only become more confusing.

The best solution is to find a doctor and/or treatment center that is very knowledgeable about these new therapies.  But make no mistake about it, CAR T-cell therapy is a very exciting new tool in the fight – and possible cure – against blood and bone marrow cancers.  And that is definitely something to pay attention to!

The Gift That Keeps On Giving

Multiple Myeloma is a “hard to figure out” cancer.  It is a cancer of the bone marrow that will take over your marrow and crowd out its ability to produce platelets and red and white blood cells. In a small percent of cases, it can be caused by a defect in your chromosomes which makes it hereditary.  Otherwise, they do not know what causes it.

I have heard some people blame over-exposure to petroleum chemicals, while others say over-exposure to wood working saw dust (I assume from cutting up plywood and other chemically-joined wood products) can be the cause.  But nothing definitive has been shown to prove any of this.  And stupid me thinks that if these were the causes, why aren’t all gas station attendants or carpenters affected with Multiple Myeloma?  I guess those of us who get it are just the “lucky” ones.

There are five subsets of Multiple Myeloma and two types of light chains which they produce in your blood – called kappa and lambda.  My Myeloma (which always reminds me of the Knack’s song My Sharona!) did a very strange thing when it came back on me three years ago, my light chains changed from lambda to kappa.  Very weird!  I am told this can happen in about five percent of the people with Multiple Myeloma.  Again, I guess I won the lottery.  Maybe I should be buying more Lotto tickets!

Another word of warning: sixteen years ago when I was initially being treated for my Multiple Myeloma,  in their efforts to reduce the level of cancer so I could have an auto-stem cell transplant they gave me a combination of drugs that included platinum.  Well, it did a terrible number on my kidneys.  I eventually recovered but my kidneys have been compromised ever since.  I don’t know if they prescribe that anymore, but keep this in mind and talk with your doctor about it if you hear they want to give you a drug with platinum in it.

Something to know about Multiple Myeloma is that even if your initial treatments are successful at eliminating its presence, it is highly likely that it will eventually come back on you.  They call this a recurrence.  The thing to remember is this is very likely to happen to you, and you should not panic when it does happen.  It does not mean this is the end of the line.  It means you and your doctor need to decide on the next treatment option – of which there are many! – to throw at it to knock it back down.  And then again and again as you work down the list of treatment options and keep buying time.  And hopefully before we run out of options they will have discovered a cure.  Please God!

See You In Thirty Days

Since it appears that many people new to my blog have not read all of my previous posts (shocking, I know!) I thought it would be appropriate to re-post my original thoughts on why I am writing this blog and the source of the title.

In 2002, a few days after my 45th birthday, I was diagnosed with Multiple Myeloma (bone marrow cancer).  Happy Birthday!  When I got the phone call from my oncologist informing me of the diagnosis, I had learned just enough about Myeloma to ask “what stage was it?”  When he told me it was stage three, I said “well that’s not so bad, what out of ten?”  To which he replied “no, out of three.”  Well, I thought that was hilarious and cracked myself up.  I think that was the point that I became good friends with my oncologist.

Multiple Myeloma is not a particularly cheery cancer.  It is a terminal cancer with no known cure – YET!  At the time I was told that I would be lucky to live three years.  After some pretty intense treatments including a stem cell transplant using my own “cleaned up” stem cells, I am now going on sixteen years being pretty much Myeloma-free.  And for the most part they have been GREAT years.

That is, except for the year and a half starting on November 30, 2016 when my oncologist informed me that I had a full blown case of Acute Myeloid Leukemia.  He told me I had to go into the hospital the next day where I would be for a month starting my intense treatments.  I said “Come on, really? Drop everything and go in for the month of December?”  He told me that if I didn’t, I would be dead in two weeks.  Well, guess who dropped everything and went into the hospital the next day?  Merrrrry Christmas!

My Leukemia treatments were a heck of a lot tougher than my Myeloma treatments.  It included another stem cell transplant, this time using my brother Kyle’s donated stem cells (love that Kyle!!!) and a much longer and tougher recovery period.  The good news is I am now fifteen months post-transplant and at this point there are no signs of Leukemia in me!  While they are all very happy, I don’t think my doctors quite know what to do with me.

Anyway, as most cancer patients who are undergoing treatments know, “See you in thirty days” is usually the time between doctor appointments.  You have thirty days to worry about if the other shoe is going to drop, or you can try to live your life.  Learning how to live your life in thirty day increments is a process and it takes a while to get to the point where you can accept your situation and strive to make the best of it.

Hopefully my experiences can be an encouragement to others and my crazy life can add a few laughs along the way.

PS: Please add comments as you feel like it, and subscribe to this blog.  Or you can bookmark the page address and come back later to check out new posts! Thanks!

Okay, So What Now?

So you’ve beaten the odds and survived a year and a half of very tough treatments for Leukemia.  Congratulations!!  You know you should be so full of joy and enjoying each day as it comes along, and you really are.  But when you are quiet there is still that whisper of a voice in the back of your head reminding you of the seventy-five percent chance you are not going to survive past the next four years. 

I wonder if that is why I can no longer stand to hear the commercials on TV promoting some wonder drug or another.  I mean they really, really bug me now.  And don’t let me anywhere near those commercials promoting drugs to take during chemo!  I have to walk out of the room whenever they come on.

Maybe it is because I still am not one hundred percent recovered.  I mean I am almost there and can function fine; it’s just that last little edge isn’t back yet.  And that bugs me.  But maybe it is more the case that as many times as I tell myself I have accepted this as my new reality and have made my peace with whatever might come, I really haven’t.  Truth be told, that is a pretty huge thing to make your peace with.

In no way am I meaning to make this a “poor me” story in search of encouragement from others.  It is just my reality right now, and I am sure it is also the reality of many other people who have gone through similar situations and I hope are reading this.  Know that you are not alone.  I think it is best to call it what it is, cut myself some slack for having these feelings, continue to work at accepting this as my life now and to make the best of it.  And know that it will take some more time to fully “get there.”  And that’s okay, too.

And here are two GREAT reasons to be happy with every second of every day – my two (currently!) grand kids – Anne (age 6) and Porter (age 2 ½).  Yee-haw!!